Decolonising health data
Authors: None The Lancet Digital Health
Journal: The Lancet Digital Health (2023)

Aug 9 marks the International Day of the World's Indigenous People, which aims to celebrate and recognise this small but powerful community. Indigenous people are disproportionately affected by poverty and many studies have drawn links between their colonisation and poor health. For example Indigenous people have experienced negative mental health impacts after land dispossession and their life expectancy is up to 20 years lower than non-Indigenous people. This year's theme, Indigenous Youth as Agents of Change for Self-determination, acknowledges that Indigenous youth are using cutting-edge technologies to develop a more sustainable future. But can technology support decolonisation and improve health care for Indigenous people? Digital health solutions for Indigenous mental wellbeing have shown great promise in providing remote access to health care, patient-directed solutions, and building the local capacity of Indigenous health-care workers. However, a systematic review to determine barriers to successful digital health deployment in Indigenous populations identified that cultural and linguistic perspectives are key to the design and delivery of digital health tools. To overcome barriers associated with Indigenous languages, which are under threat of disappearing, new generative artificial intelligence (AI) models have the power to translate much of the world's knowledge into different languages. Whisper, launched by OpenAI, was trained on 680 000 h of audio, including 1381 h of the Māori language for speech-to-text translation, which could be vital in improving current telemedicine approaches. However, Whisper has been criticised for not including Māori people in the development of the tool, which risks depriving members of minoritised groups of their rights, echoing their colonial past. Furthermore, data representing Indigenous communities are not sufficient to build accurate AI tools, which threatens to bias these tools and spread misinformation. To address the representation bias in health datasets, programmes such as the All of Us Research Program by the National Institutes of Health have promised that 50% of participants are from under-represented minoritised populations, including Indigenous communities, highlighting the programme's goal of promoting the equal benefits of precision medicine. However, initiatives like the All of Us programme have reportedly very few mechanisms to protect against the commodification of Indigenous peoples’ data. Furthermore, it is not clear that insights gained from research in these populations will lead to direct benefits for those communities. Research must be guided by a framework, such as the CARE principles, for ethical and socially responsible data use and ongoing engagement with Indigenous people, ensuring respect for cultural sensitivity and data protection. Initiatives like the All of Us programme also have few Indigenous leaders, despite an increasing presence of Indigenous people with expertise in research and health policy. Greater participation of Indigenous people in the governance of data and development of AI tools and policies is vital to the success of improving health care. To encourage participation of Indigenous people in research, publishers are committed to amplifying and increasing the impact of research by and about Indigenous communities. Elsevier, the publisher of The Lancet Digital Health, has launched First Nations Health and Wellbeing - The Lowitja Journal with the aim of increasing access to First Nations research. This new journal highlights papers with major contributions from First Nations authors, which is key to ensure that research directly benefits the communities they are intended to serve. In this vein, The Lancet Global Health are piloting a new statement to be published about the research partnerships in studies, exploring how research affects and is shaped by researchers and communities in the study settings. This pilot is currently aimed at research collaborations between lower income and higher income countries; however, they hope this initiative can go further for studies in minoritised groups such as Indigenous populations. Research must be conducted with respect to the contributing communities and invest in capacity building for marginalised groups. Indigenous peoples have the right to control the use of their health data for the interests and priorities of Indigenous people. Until data sovereignty is granted to Indigenous people, technology will not support health equity and decolonisation.